There is way more to me than just a life with Cystic Fibrosis, but its a huge part of my life, it affects everything i can do! Somedays i hate CF others i just get on with it! This is my life, my story, the way i deal with CF and the way it affects me! So read with an open mind, don't judge me or feel sorry for me! i'm stronger than you think and i'll keep fighting till the very end!!

Tuesday, 19 April 2011

Well everything was going really well, i was walking Sophie and i was feeling lots better until Lung function day. I swear lung function day is becoming a jinx to me, i spend all week at home feeling fine, waking up and feeling good, not coughing n splutering everywhere, then lung function day arrives and i wake up i feel like a bag of crap and i'm coughing, out of breath and filling a pot with sputum and that before i get to the hospital. So there i was hoping for good results, i got to the hospital and decided to see if i could walk up the stairs, normally i'm a lazy bugger n use the lift and come down the stairs. The hospital stank of rank hospital food, so when i got to top of the stairs i was out of breath and the smell of food nearly made me sick!! Nice!! Next Joey just use the lift x

I got to room to do my lung function, sat down and straight away the physio went and got me some water, while she was gone i had a grabbed the pot on the side and started to fill it, not normally like me at all!! To my delight streaks of blood, but as it wasn't a big bleed I was still allowed to do my lung function. Which was quite hard work considering everytime i started to blow i wanted to cough n clear the crap! Worst thing about it is I could feel exactly where it was coming from - my RIGHT side just under my booby!! :) This was a bad patch for me last year that caused me alot of problems and I had about 5 IV courses before it actually dampened down in December, it's been quiet since then till now!!

It's strange I never had a bad patch that I could actually feel before, its not like pain, it's just strange, when i cough and clear the crap i can feel where it's coming from and when I have bleeds this is always where it's from, 90% of the time i've always know where my bleeds came from but now with this side I feel the vessel pop n know i'm bleeding before I even get the gurgles.

So friday started to worry me abit, I was hoping for a lung function in the 40's, 41 is my target number, I only managed 38 which to be fair actually wasn't too bad it was a flook blow after clearing all the crap the other 2 blows weren't that good. It turned out to be a good physio session, in fact i did comment to the physio if possible could I stay for an hour, just do a blow every 5-10 mins and clear all this cuz doing my lung function has always been brilliant for me, but just the usual physio response, i'd like you to go home and do your nebs and acapella please! Well i do have a busy life, that wasn't on my agenda for the afternoon!! :)

What was on the agenda was picking my mum up from hospital, she was being discharged and now has all clear fingers crossed from her kidney stone problems after her operation on wednesday last week. So thats something hopefully I won't need to worry about anymore.

I wasn't too bad over the weekend, my friend Gemma dyed my hair for me, i no longer have grey roots, lol and we went and did a little shopping then made rice krispie cakes. They were yummy, so yummy that on sunday i was going round to my mum and dad's to watch the Stoke match, i asked my dad to get me some rice krispies and chocolate so i could make more before the game started.

I used to help my mum and my nan bake loads when i was a kid, i used to love it, especially licking the bowl from the chocolate cake mix and butter icing. Yum Yum!! xx

So when I got there, I ate my Sunday dinner and then started baking, i wanted to make some rice krispie cakes for Steve too to bring home and then mum said why don't you make flapjack there are some oats and syrup in the cupboard. So seemed like a plan. I had to make sure my mum took photos of me though cuz Steve so wouldn;t believe i made them myself. lol.

Then I watched the Stoke Match, The Semi Final against Bolton, I was hopeful at the beginning but kinda thought we were gonna loose to be honest, we not beaten Bolton for a while, but when the first goal went in, then second and third in the first half it was brilliant. I think me, my bro and my dad gave my grandma and grandad a heart attack everytime the ball went in the back of the net. I would of loved to be at Wembley but I have been years ago when we were in the Auto Windscreen. It was brilliant game and to win 5-0 was amazing. Come on Stoke i hope we beat Man City in the final.

After the game I was just sat quietly eating a sandwich then my right lung started again, this time a Bleed, my nan ran into the kitchen and got me the kitchen roll. I was pretty calm, knew it was coming but didnt want to move myself, I felt bad cause they were all sat eating and i was sat coughing up blood into a kitchen roll, but I'm so used to them now, i sit and I control it, I cough when i want to cough and clear it, when I feel it ready, although it horrible to have a bleed, this bleed was being kind to me letting me control it, if i can control a bleed then i feel safe and comfortable with it, it's when I can't control it and have to go to toilet with it that i worry. But it was controlled, i cleared what i needed to then drank a glass of coke and carried on eating my sandwich. It had come from that naughty light bad patch on my right lung. When i got home i started myself on the transamic acid i have in cupboard.

I have had a lot of bleeds though, all very random, it's stupid, quite often my bleeds come in the middle of the night and i lie there thinking well i must of ran a marathon in my dreams or something, cuz i've been still for 8 hours. Then other times i've had them in the middle of a night out, so inconvient, my friend will be worried cuz i always tell someone i'm having a bleed before i dash to the toilets, quite often my friend Ames would be the one with me, as soon as i'd clear it she's ask if i was ok and i'd be like yes, i'm fine, BAR now!! I normally needed a drink to swill my mouth out and i'd normally have a vodka and coke, for some reason i crave coke after a bleed. Bleeds to me are quite normal, when i know i'm ill I do something about it, but when i'm well i know its probably just random bit of mucus that has been stuck to vessel wall that has moved and the tiny little vessel has bleed. How i think of it is its just like a scab you get on your knee of something, if you catch it or rub it it bleeds and thats what happens in my lungs. I think thinking like that helps me not to get so scared by them because when i was about 10 the girl who i had looked up to and was like a big sister to me Donna Hackney died and she died from a huge bleed. So as much as I play them down as being part of my life i know they can be serious, but i have to stay calm to stay in control so that i can keep living my life. xxx

So with my naughty little right lung miss behaving, i rang the hospital yesterday morning to ask for another week of iv's, to up my steroids and told them i had had a bleed and had started the transamic acid. He consultant said fine, but he just would like to see me at 4.15 at end of clinc to check on me! Which was fine, i was working till 4 and then i'd be going up hospital to get my drugs and everything anyway.

Tuesday, 12 April 2011

Last week was a bit of a wake up call for me really, it's not that i've really neglected myself it's just so many things were going on in my life that mentally and emotionally i didn't actually have time to rest!! Thats why after only finishing IV's 4 weeks ago, i ended up back on them again a week ago!!

The IV's 4 weeks ago I booked in and I was feeling well when I had them, my lung function was 41 when I started, I had booked them in because i knew I was going to have a big weekend with my dad's birthday and also because I wasn't too well in January so I figured book them in for middle of Feb would be good. I've done this before, I book them in because it means you get to have them mixed with pharmacy. Mixing IV's can be hard work and it's alot of added pressure when you feel like a bag of shit and you've got to start mixing the drugs, i rely alot on Steve to help me mix them! He is brilliant though but it's hard on him, like last week he worked a few nights till 7 8 o'clock at night, came home, had tea and then had to help me mix my drugs. He mixes the Ceftazadime, I hate that bit, he's really quick at it now, years of practice, i do the rest, tobi and heparin but it is a lot to put on him sometimes. Sunday night was last night we needed to mix my drugs and Steve made the most of my friend Sarah being round, she is training to be a midwife and like Emma from work loves doing my drugs. Steve however said that she could mix the Ceft for him. Sarah ended up mixing all my drugs, with me telling her what to do, she loved it!

Maybe next time i'm on iv's i just need to invite a different friend round each night because i am quite lucky that they are all interested in my CF and get excited about mixing and giving my IV's.

So my mission, Saturday i actually thought i was having an adrenaline day, expecting to feel like shit on the Sunday i decided to make the most of it. I got up and cleaned the kitchen, then had a little rest while my tobramycin went through, which now take half an hour on silly pump!!

Then after than i got another sudden burst of energy and went and cleaned the bathroom, why cleaning the bathroom is such a bloody work out i don't know!! Cleaning round the bath don't half wear ya out!! Then i did my nebs and had a shower! I was then waiting for Steve to come home so we could go to Tesco and Homebase and he was taking me out for tea!! :)

In a moment of pure madness i decided to take my little pup for a walk, it's something i'd been thinking of doing ever since the light nights started, it was such a lovely day saturday and i was feeling ok so i figured i give it ago, if i got tired i could always turn back or take a shorter route round the estate. I don't particularly like walking and have tried walking Sophie before but not kept it up, like did it for a week and then it would rain or something and that's it.

But i did it, Steve actually got home whilst me and Sophie were out, he rang me worried, Jo i'm home and your gone, the dog's gone but you're car still here!! "That's because me and Soph are out for a walk" I said, to say Steve was shocked is an understatement. Even his mate Joe didn't believe where I was. I actually enjoyed it, enjoyed it that much that I took her twice on Saturday, i took her again when we got back from having an early tea at Frankie and Bennies. Yum Yum.

So it's now Tuesday and Soph has been walked everyday and i'm quite enjoying it xx Lets hope i can keep it up, If i can at least walk her 3 times a week i'll be proud of myself. But for now i'm going for everyday cuz the sun is shining and its so much better than doing physio!! xx

Soph's having a nap right now, so it's Tobramycin and Lunch and Cuppa time for me, i've just turned the Wii on for the first time in probably over a year! Not to do exercise i wanna watch the bbc i player and that Candy Cabs programme, looks brilliant. After that i'll get dressed, take Sophie for a walk and treat myself to a Sunbed.

So my mission is:

To be good girl with my IV's

Do my nebs once a day

Walk little Sophie

Get a Tan

Then when i'm back to myself i think about getting back into my fundraising, i've got lots of ideas just need to get well first so I can start planning.

Thursday, 7 April 2011

I think it's clear to say although i had been on Cipro and higher steroids for the last two weeks my body was running on adrenaline or the drugs were just keeping me ticking over!! As soon as Saturday came my body felt physically exhausted, i was lucky my friend Ula had actually stayed over Friday night after the pub crawl cuz she spent the day making me lots of cups of tea, even bought me tea and biscuits in bed!! :) x

By Friday evening i felt like "The Tap" had been turned on!! My poor little lungs were filling with crap (sputum) and it was a struggle to do anything without coughing my lil head off!! Sunday wasn't much better, i managed a shower in the morning and made it round to my mum's for Sunday lunch, even my mum knew i was ill, she said she could tell last Wednesday from round my eyes!

It was when i was trying a dress on for my mum to shorten for me that i realised it was gonna be on iv's soon. Just taking my top off and putting the dress on i felt out of breath. Very frustrating.

Like a good little girl, knowing I was back at work Monday i decided to call first thing to try and arrange iv's to start over the next few days. Monday my adreneline kicked in again, i had a horrible morning, getting ready to go to work but then once i actually got to work i felt ok, after work i wasn't as exhausted as I thought and in my house there was seriously no food so I rang Steve went and picked him up and we went food shopping. I survived getting round Tesco and Steve had got Squash booked, he told me just to leave the shopping and he put it away when he got back but somehow I had energy to do that too!

Monday was a day of me so surviving on Adreneline like me sorting my life out ready for the IV's cause Tuesday morning I felt horrible, like really horrible. Some of you reading this would prob say i over did things on Monday, your probably right but sometimes things in life just have to get done. At 12 I was meeting my physio to do my lung function, getting out of bed n too the hospital was hard work, by the time i actually got to the ward i felt so ill, it was a question of if i needed IV's and I didnt need no doctor to come see me, I was having IV's.

My lung function was 32, and that was bit of a fluke blow, the other 2 were quite a bit lower. Being anywhere below 35 scares me to be honest, 30 is a number that is way too low for me to cope with. 39 is me stable, 41 is good and 44 which was my best last year is me swinging from the roof tops. So now i'm on my iv's i'm aiming high this time, I'm gonna be a good girl and do my nebs each day and when im feeling bit better i'm gonna try taking my cute little puppy for little walks. I'm still going to work, I only work 12 hours a week, so many people shout at me for going to work when i'm ill, but once i'm there i'm OK and if i'm not i got a good group of people around me to help me out. I think yesterday a few of them were a little shocked when i walked in with tubes dangling off me and my tobramycin pump in my handbag. I had just been for my levels and had the pump going through as I was driving to work. I'm not the kind of girl to hide away from my CF so walking from my car through shopping centre with tube hanging from my arm to handbag really doesn't bother me!! My friend Emma was quite excited when I got to work, she loves doing my drugs so she sneaked in the back and flushed me off!! She thinks it's ace doing my drugs, i'm sure she wouldn't think the same if she was doing them 3x a day for 2 weeks, but its a nice little break. I take my Ceftaz to work with me and do it at about 4ish and if she can she loves to do them for me!! "Nurse Emma" xx :) xx

Anyway talking of drugs and work that's where i need to be going now!! Just one last shift and i can rest till m
Monday and hopefully the drugs will have made me feel better by then too xxx

Sunday, 3 April 2011

So the day of my Pub Crawl came, to say i was nervous was an understatement, i felt pretty sick to be honest. I had arranged it all with the pubs, about 8/9 new i was coming and i had my 5 best friends all lined up and ready although they were feeling pretty nervous too!!

I'd never arranged anything like this before so I was really nervous it was gonna be a failure and i'd come home with a bucket full of pennies equalling about £10. But hey my moto of the night i borrowed from Tesco "Every Little Helps".

I had asked my friends to dress kinda like Gangsters, but as there was only a few of us I hadn't really thought too much about the outfit, i'd just said shirt, tie and black skirt or trousers!! I had bought myself a black shirt and purple tie, purple was for Breath of Life. I'm kinda big headed but i like to think it looked pretty good. Except my shirt had come untucked in this piccie!! lol

When we got to our first pub the Weathervane in Meir Park we were all so nervous, I so a glass of rose was needed!! We piled the tubs in a corner and told the people behind the bar that we were here to do collection as planned but we all needed a drink for dutch courage to start with!! lol

Steph started talking to a few people at the bar and before i knew it i was giving people information for the Skydive i was arranging!! Which was great. Two lads even helped start us off with the collecting by going round with the buckets,Then my two girls Ula and Steph started going round too, they did great job and it gave me the confidence to join in!!

Steph, Ula and Me

Emma and Me

Me and Ames

Then i bumped into a lad called Dan who i had met only a couple of times, he was married to my childhood friend Larah who I hadn't really seen since we left college. He was with his friend Mike who i found out was going to marry Liz who was also my childhood friend. We had a great laugh with them, as i made the mistake of saying to Dan when he was off to the Loo or something, when you come back Dan I want you to "Fill my Bucket" (Sorry Larah) not my best line, but hey it worked!! When we were about to move on to the next pub, which was only round the corner, the came along too, on the condition they helped us out by getting money from the ladies!! hee hee xx

So the next pub was the Potters Bar on Meir Park, here I had my confidence and went round with Ula!! She was great and had a whole little speech going about raising money for Breath of Life to help people with breathing difficulties like her friend Joey (me) who has Cystic Fibrosis to help buy them equipment for hospital and keep them looking well so they can arrange amazing night like this and look so healthy!! which was so lovely!! She was really good!!

Me and Gem

Next we were off to Windmill at Meir Heath!! Every pub i went to i seemed to meet people i went to school with which was great, helped to get more money in the bucket from there friends. We were doing so well though it was so good. The boys were doing great and Steph was in charge of one of the girls buckets and Ula the other, they were both great at talking to people and telling them about it. I managed to get a 10er off one guy who said my husband was a very lucky guy and he would of loved to take me out!! Personally what I loved about him was his money for the charity!! I have my man!! :) xxx

So then it was off to the Lightwood Tavern, the time was getting away from us, we were having a great night and everyone was so kind and generous and they didnt just chuck money in and want us to get lost people were really interested in knowing what the charity was about and what we were up too!!

Last stop was the Florence, it was 10.45 by time we got there and the puub was quiet, but a Gem knew a guy who she used to work and he was on a work night out with crew from Tesco Mobile Longton!! They were all really generous!! Breath of Life are gonna be at Longton Tesco Collecting on 6th and 7th of April so if you pop in to do your shopping peeps making sure u put some money in the collection boxes!!

So the Florence was our last stop!! We had a great night, Liz came to pick Mike up and i hadn't seen her for years, Mike is now gonna do the Skydive too so that's great.

So after giving everyone a lift home, Ula decided to kip on my sofa we came home, ate pizza and sat up till half 2 counting the money, we were two excited to sleep!!

We raised ...........

£283.33

Thanks to all the pubs who let us do the collections and for everyone in the pubs for there very kind donations.

I wanna thank my girls and my boys for an amazing night and for helping me raise money for Breath of Life!! Your all stars and i love you all!!! Next time and I definitely think there will be a next time we're all gonna were Black Shirts, Purple Ties, and Black Skirts (even my newly recruited boys) lol!!!